Confronting Endometriosis

Padma Lakshmi, author, actress, model, and Emmy-nominated host and executive producer of the hit TV show Top Chef, endured a 23-year struggle to find relief from endometriosis. The condition occurs when tissue that normally lines the inside a woman’s uterus grows outside the uterus, and can cause pain, infertility, and very heavy periods. From her teen years into adulthood, she suffered with severe monthly cramping, shooting pains, and numbness without knowing why. In her mid-30s, she was finally diagnosed with endometriosis. She recently revealed to NIH MedlinePlus magazine how the experience shaped her advocacy efforts for those with the condition.

Would you share your personal history with endometriosis?

My symptoms started with my first period when I was 13. I had severe cramps and excessive bleeding, which were present throughout my adolescence and got worse and increasingly difficult to manage while I was in college. Sometimes it was so severe my pelvis was numb and pain shot down my legs. I tried to relieve the pain using heating pads, hot water bottles, acupuncture—but nothing worked. I was bedridden up to a week every month, missing out on family time, social engagements, and professional opportunities. Worse than not finding relief for my pain was that no doctor could tell me what was wrong.

It wasn’t until I was 36—23 years after my symptoms began—that I finally got some answers. I was referred to a great gynecological specialist who examined me and suggested that my pain might be the result of something I had not even heard of: endometriosis.

My endometriosis had advanced so much that it was wrapped around my abdomen. I have had four laparoscopic excision surgeries. My endometriosis isn’t gone, but it is manageable.

What was your reaction when you received your diagnosis?

I realized I wasn’t a drama queen and I didn’t have a low threshold for pain. I actually had a condition that made a lot of different issues in my life finally make sense to me. I knew my pain was real, but I did have a feeling like why can’t I handle one of the basic aspects of being a woman? You start to feel weak and emotionally isolated. I was conditioned to expect discomfort and pain because I had witnessed my mother experiencing the same thing.

It is terrible that I am a college-educated woman with good health insurance and it took me well into my mid-30s to get a good diagnosis. I lost time, but I resolved that no girl should have to suffer like I did. That is why I started the Endometriosis Foundation of America (EFA) with my surgeon, Dr. Tamer Seckin, to increase recognition of endometriosis, provide advocacy, facilitate expert surgical training, and fund landmark research.

How do we help both women and men get more comfortable talking about endometriosis?

We need to listen to and support these girls and young women who are going through this. Endometriosis is a family issue. When a woman has chronic pain, the whole family is impacted. We want to empower girls about their own bodies when changes are occurring.

One of the things I am most proud about at EFA is our ENPOWR™ (ENdometriosis: Promoting Outreach and Wide Recognition) Project. We have educated more than 15,000 young girls and boys about the illness.

“We need to listen to and support girls and young women who are going through this.”
Photo courtesy of: Christina Paige

We talk to boys and girls together to remove the stigma. The boys are just as inquisitive as girls. One young boy told me, “You know I think my mom has this. Everything you were talking about I have seen my mom go through. How can I help her?” That meant everything, because not only were we sending him home to help his mother, we were helping to make him a compassionate ally for women throughout his life.

We also have conferences for health professionals to educate them and start a dialogue about endometriosis.

What are your hopes for the future and endometriosis?

Research including the EFA’s work with the ROSE (Research Outsmarts Endometriosis) study is looking to identify improved diagnostic and treatment techniques. We want everyone to know about endometriosis. Information about the signs and symptoms of endometriosis should be on every tampon box, along with information about where you can go for help. I want to prevent women from suffering.